Thousands of allegations of abuse and neglect have been made against the programs that care for people with developmental disabilities.

As she waited for her meal during a routine trip to a fast-food restaurant in Northern California’s Bay Area in July of last year, a woman with a developmental disability was lured away from her adult day care group. The staffer overseeing the group ordered food, but it wasn’t until after he ordered that he realized the woman was missing. C1, as she is identified in state investigation records, was found 30 minutes later in the back seat of a car with a registered sex offender who was later charged with sexual battery, according to the investigation report.

Patricia remembers that day. Her daughter, Jackie, attended the same program. When a staff member dropped off Jackie and told Patricia what had happened, Patricia called in a complaint to the agency that referred her to the day program. A few months later, Patricia made another complaint, this time for her own daughter, fearing that she too had experienced sexual abuse at the day care.

At Patricia’s request, FiveThirtyEight agreed not to use her and her daughter’s real names, both to protect Jackie’s privacy and because Patricia is afraid that coming forward might dissuade other programs from admitting Jackie.

Though they are anonymous, they are not alone.

A joint investigation by The Investigative Fund at The Nation Institute and FiveThirtyEight has found that from 2013 to 2017, there were at least 2,400 reported allegations of abuse and neglect in the more than 4,500 day programs like Jackie’s in California.

The goal of adult day care programs is to help clients build their capacities by doing activities in their communities, rather than by being sequestered in live-in institutions. But our findings, along with a series of industry association reports that found funding gaps have affected the quality of care at day programs, suggest that the state’s adult day care system has its own problems. This summer, 51-year-old Timothy Cortinas was found dead in a car in West Covina, California; a lawsuit alleges that he was left alone in the vehicle for hours by a day care staff member as temperatures inside the car climbed to over 100 degrees.

C1 and Jackie, who has Down syndrome, are among the people most vulnerable to sexual, physical and emotional abuse. People with intellectual disabilities are seven times more likely to experience sexual assault than people without any disabilities, according to the U.S. Justice Department. A nationwide movement has increasingly held people in authority accountable for sexual abuse. But people with developmental disabilities — particularly those whose disabilities affect communication — encounter many additional hurdles before their cries of “me too” are heard.

Adult day programs like Jackie’s are part of California’s decades-long search for alternatives to institutionalization, which segregated and isolated people, according to advocates. Many people with intellectual and developmental disabilities have historically lived in institutions that provide 24-hour care, some of which have come under scrutiny for keeping abuse behind closed doors. The state’s 1969 Lanterman Act entitled people with developmental disabilities to services that would help them live the most independent lives possible, and it put California at the forefront of a national push to give people the support to live at home while working or attending programming during the day.

As part of the Lanterman Act, California established 21 nonprofit regional centers connecting individuals with state-vetted services, including day programs. From 2008 to 2016, the number of people attending day programs grew from roughly 51,000 to nearly 70,000 people, according to the State Council on Developmental Disabilities. Clients must receive services through the regional centers to qualify for state and federal funding that will cover the cost of attending a day program.

Adult day programs in California self-reported 1,964 incidents of suspected abuse from January 2013 to December 2017. Those incidents include sexual, emotional, mental and physical abuse, among other allegations. In the same period, there were 463 allegations of neglect.

Some of those clients and their family members have reported dangerous conditions. Hundreds of allegations of abuse and neglect at adult day programs are reported to the state each year.

There are a couple of ways that the state can be notified about an incident. One is by the day programs themselves. When there is suspected abuse or neglect at an adult day program, the program is required to submit a report to the regional center that verified the program meets state requirements and standards. The regional centers, in turn, pass along the reports to the California Department of Developmental Services, which contracts with the regional centers.

According to records that we obtained through a California Public Records Act request to the department, adult day programs in California self-reported 1,964 incidents of suspected abuse from January 2013 to December 2017. Those incidents include sexual, emotional, mental and physical abuse, among other allegations. In the same period, there were 463 allegations of neglect.

When shown the findings, Leslie Morrison, director of external relations at Disability Rights California, a leading advocacy organization, said: “It is shocking. That is a high number. We would like to see a number closer to zero.” She added that abuse and neglect are typically underreported.

It’s unclear how many of those allegations resulted in citations or other penalties against adult day programs. The department told FiveThirtyEight that information about outcomes wasn’t available.

The Department of Developmental Services declined to provide a representative to be interviewed for this article; in a brief statement, however, it said that all reports of what the state calls “special” incidents “are reviewed on a daily basis by staff to determine if the correct entities were notified, if the appropriate actions were taken to ensure the health and safety of impacted individuals, and that safeguards are implemented to avoid a recurrence.”

The “special incident report” data set covers all of the roughly 4,500 adult day care programs in the state. However, there is an important distinction between types of programs: While all day programs are “vendors” authorized by regional centers, some are licensed, and others are not. Licensed programs are those based out of a central facility, while non-licensed ones are “programs without walls,” in which staff members work with clients in locations throughout the community, such as parks or shopping malls.

Another state agency, the Department of Social Services, also receives special incident reports, but only those from the day programs that it licenses. Members of the public — including clients’ relatives, bystanders or day care program employees — can also notify Social Services about allegations of abuse or neglect at a licensed program through a separate “complaint” process. And the public can access information about the history of allegations and citations that have been leveled against each licensed program through an online search tool that is updated by the department.

But more than 2,000 of California’s programs are not licensed.1 For these programs, clients and their relatives are unable to search a public registry to find out whether there have been problems in the past.

Unlike with the “special incident reports,” we do have some sense of how often authorities substantiate allegations made to the Department of Social Services through the second mechanism, the complaint process. According to data we received in response to a public records request to the department, there were 783 complaints made in the more than 1,000 programs that Social Services tracks between December 2012 and December 2017. The complaints encompass any allegations of a licensing regulation or law being violated. Of those complaints, 377 led to at least one substantiated allegation by Social Services, and 211 led to at least one Type A citation, which is given for violations that posed an immediate threat to a client’s health and safety.2

Jackie’s mother made one of those 783 complaints.

ILLUSTRATION BY HANNA BARCZYK

Patricia moved to a new city in the San Francisco Bay Area in 2014 with Jackie, who was then in her late 20s. Once there, Patricia relied on the local regional center to find a safe place for Jackie to spend her days and meet new people in the area. She said she didn’t expect that finding a program she and her daughter were happy with would be so difficult or that finding recourse for the abuse she says Jackie experienced would be so challenging.

Their story points to how difficult it is for nonverbal clients to provide evidence of an alleged assault and how hard it is for authorities to investigate the allegations.

The Regional Center of the East Bay referred Jackie to several day programs, and Patricia chose Mission Hope, which has four locations in Northern California. “They said, ‘This place is good; we recommend you put her in Mission Hope.’ When they recommended it, I trusted that,” Patricia said.

But instead of seeing her daughter learn and grow in the program, Patricia said, she saw Jackie regress. Jackie started having screaming episodes when she was upset, something her mother says she didn’t do before.

Patricia pulled Jackie out of Mission Hope and called in a complaint to the regional center to report that she suspected her daughter had been sexually abused by a male staff member.

Jackie didn’t seem like herself, Patricia said. At night, Jackie, who speaks only a word or two at a time because of her disabilities, repeatedly said, “bad” and “time out,” according to her mother. Then, right before Thanksgiving last year, Jackie did something that Patricia said was new — a behavior that was a red flag for Patricia. Jackie pulled down her shirt and showed her chest to relatives.

Because of the severity of her disabilities, Jackie is in many ways like a child. As a result, Patricia said, she had taken care not to expose Jackie to sexual activity on TV or anywhere else. Patricia tried talking to Jackie to find out where she’d learned that behavior. Patricia said that when she asked Jackie why she had pulled her shirt down, Jackie said the word, “man.”

Patricia pulled Jackie out of Mission Hope and called in a complaint to the regional center to report that she suspected her daughter had been sexually abused by a male staff member.

Mission Hope’s day programs are licensed by the Department of Social Services, which launched an investigation. And because the case involved an allegation of sexual assault, local police were alerted and also opened an investigation. Each of these entities sent someone to interview Patricia. They also interviewed staff members at Mission Hope, who, according to the police report, said they never saw a male staff member interacting inappropriately with Jackie.

Getting Jackie’s testimony, however, proved to be more difficult.

At a young age, Patricia started using a technique with Jackie called “facilitated communication” that has been generally discredited by the scientific community. It’s supposed to be a way to communicate with those who otherwise can’t speak. But it relies upon a third party to guide someone’s hand or elbow as the individual points to letters or symbols on a device like an iPad.

After Jackie exposed her chest to relatives but before Patricia filed her complaint, Patricia used this technique with Jackie. Patricia said that she and her daughter typed several messages, which were included in the police report: “he touched me on top and said don’t talk to mom about it… he touched my bottom… he touched me for him to feel good… too sad.”

James Todd is a professor of psychology at Eastern Michigan University and has served as an expert witness on cases involving facilitated communication, including the Anna Stubblefield case, in which a woman accused of sexually assaulting a nonverbal adult defended herself by pointing to facilitated communication messages in which he consented to sexual contact. When asked what the scientific consensus is on facilitated communication, Todd pointed to decades of scientific study and said, “The only consistent finding is that the facilitator is the author.”

The police report did not note that the messages had been typed using facilitated communication, which is also known as supported typing. Patricia believed the messages meant that Jackie was being abused, and she said she had other evidence. A bruise had appeared on Jackie’s backside a few days before she exposed her chest to family members, Patricia said, and Jackie had started having nightmares and screaming out at night.

Mission Hope administrator Nissie Escolano and California’s Department of Social Services said they could not comment on any specific person’s case, including Jackie’s or C1’s. Escolano did offer this general comment: “Any complaint we take seriously and we always do a full investigation. We call the proper authorities because we are mandated reporters.”

The investigations by police and Social Services hit a wall. Patricia said the Fremont Police Department wanted Jackie to be interviewed without her, but Patricia insisted on being present. Without Patricia’s consenting to Jackie’s being interviewed, law enforcement suspended the case, according to the police report dated Nov. 22, 2017. The report said the police department asked Patricia whether she wanted to proceed with the investigation and that she responded that she did not want to “further traumatize” her daughter.

“The system should be fitting into our lives and serve our handicapped people: ‘Let’s see how we can help them,’” Patricia said. “The heartbreak is too much for me.”

Morrison, the disability-rights advocate, said that it’s not always recommended to have a family member present during an interview. For example, a client might be afraid to discuss consensual sexual activity if he or she is worried that a parent will disapprove. But, Morrison said, an advocate for the client should be in the room.

Lt. Michael Tegner of the Fremont Police Department would not comment specifically on the case but described the department’s protocol for working with a minor or a victim with a developmental disability when they are investigating a sexual assault allegation. “The most important part is obviously to try to get information from the victim themselves,” Tegner said. To do this, the department works with the Child Abuse Listening Interviewing and Coordination Center in Alameda County, which aims to provide a comfortable space for minors or other victims of abuse to tell a child interview specialist one-on-one what happened.

In February, after interviewing staff members at Mission Hope, the Department of Social Services decided that the allegation of sexual assault was “unsubstantiated.” Citing Patricia’s refusal to move forward with the interview at the Alameda County center, the investigation report said that “due to lack of cooperation from victim and/or responsible party, the investigation has stalled.”

In an interview, Michael Weston, deputy director of public affairs for the Department of Social Services, said the department makes every effort to communicate with nonverbal clients. “Obviously if you have a client … who is nonverbal who cannot communicate, that would hinder the investigation,” he said. “But there are other ways to go about gathering that information.”

Patricia bristles at the claim that her “lack of cooperation” was a major reason that the complaint was dismissed. “The system should be fitting into our lives and serve our handicapped people: ‘Let’s see how we can help them,’” Patricia said. “The heartbreak is too much for me.”

In another case involving Mission Hope, a bystander at a park called the day program to report that she saw a staff person slap a client in the face, elbow the client at the neck and slap the client’s mouth with a plastic spoon.

Advocates for people with disabilities say it’s a problem when there aren’t adequate attempts to communicate with the person who may have been abused or neglected. “We see all kinds of bias that goes on in some of these investigations where they don’t interview the victim … don’t interview other people who are living in the same unit or in the same day program,” Morrison said. “Certainly victims who are nonverbal could have other means of expression. And I think that law enforcement and other investigators didn’t always take the time necessary to accommodate the disability.”

These considerations go beyond Jackie. In another case involving Mission Hope, a bystander at a park called the day program to report that she saw a staff person slap a client in the face, elbow the client at the neck and slap the client’s mouth with a plastic spoon on Sept. 19, 2017. The Department of Social Services interviewed the staff member in question but wrote in its report that an interview with the client “was not conducted due to [subject] is nonverbal.” The department’s investigation did not result in a citation for abuse or any deficiencies, although Mission Hope did separate the staff person from the client. Had the investigation concluded that there was a violation of the client’s personal rights — which include, among other protections, that clients are “free from corporal or unusual punishment, infliction of pain, [and] humiliation” — it would have issued the program a citation. (It is unclear whether the staff person still works at the facility. Mission Hope declined to comment on this case.)

In a review of dozens of investigation reports accessed via the Social Services Department online search tool, we identified multiple cases, like Jackie’s, in which allegations of abuse or neglect against nonverbal clients weren’t substantiated and the clients had not been interviewed. Weston said that documentation in a report that the Social Services Department was unable to interview a client “is not an indicator that other means of interviewing were not explored.”

Thousands of allegations of abuse and neglect are not the only signs of California’s fraying system of care for adults with developmental disabilities. Since California passed the Lanterman Act 50 years ago, decades of funding challenges have led to a system that employees and regional centers themselves have said is overstretched.

According to California’s Department of Developmental Services, adult day programs for people with developmental disabilities cost taxpayers $1.1 billion in the 2017-18 fiscal year. Still, program funding for developmentally disabled adults in California has stagnated. The rates at which day programs are reimbursed by the state aren’t much higher today than they were in 2000, costing, depending on the service, between $50 and $89 per person per day in 2017, compared with about $45 to $80 in 2000.

The state mandates an average caseload of 1 service coordinator to 62 clients. But, according to Westling, the coordinators have been handling far more.

In a 2014 report, the Association of Regional Center Agencies said the quality of services provided “is directly related to staff qualifications, retention and continuity of care.” But the goal of providing quality care, according to the report, “is unachievable within the limitations of the current rates.”

The state is also conducting a study to assess the current reimbursement rates for day programs and address the “sustainability, quality, and transparency of community-based services,” according to a statement from the Department of Developmental Services to FiveThirtyEight. If rates had kept up with inflation in the state, the regional center association estimates that by now they should have reached about $62 to $115 per person per day.

In a 2015 report, the association described California’s developmental services system as being “on the brink of collapse.” Amy Westling, the organization’s director, said “the state encountered one fiscal crisis after another,” leaving the system hamstrung. Regional centers are themselves stretched thin. The state mandates an average caseload for service coordinators, who refer clients and their families to day programs, of 1 coordinator to 62 clients. But, according to Westling, the coordinators have been handling far more.

In 2016, the California state budget provided an increase of $17 million in ongoing funds to support additional regional center service coordinator positions. But, Westling said, the caseloads the regional centers are dealing with continue to grow at a rapid pace — 15,000 new clients are expected to enter the developmental services system this fiscal year.

Given the underfunding, many day programs are under pressure to attract and retain qualified employees. Staffers in some programs earn California’s minimum wage, $11 an hour. “Their work is much more than that level,” said Nancy Eddy, who runs a nonprofit day program tailored for people who are deaf. “They can go to McDonald’s and work for that.” She said she still struggles to keep her employees, whom she pays $14 an hour.

Lisa Kleinbub, the director at the Regional Center of the East Bay, said, “People working in direct care services should not be receiving minimum wage. It requires more than that, and it is a profession.” Instead of retaining staff long enough to develop expertise and rapport with clients, day programs are losing employees to better-paying jobs.

Staffers are also not required to undergo much training before starting their jobs despite shouldering huge responsibilities with little supervision. They are required to have only eight hours of training when they start, and each year, they need to renew those eight hours. Otherwise, they have no other legally mandated requirements. In contrast, special education teachers in California schools must have a degree and credentials to work with the same population. But after someone with a developmental disability finishes school and enters an adult day program, those personnel requirements disappear.

Katie Hornberger, director of the Office of Clients’ Rights Advocacy at Disability Rights California, said she is appalled at the low level of training that employees charged with caring for clients receive. “These are our most vulnerable folks, but yet all of the caregivers we put around them are low-wage workers with the least training, the least education,” she said. “As a society, what have we decided is important? Unfortunately we have decided that people with disabilities are not that important, and we have relegated them to lower levels of care and support.”

When working with adults with developmental disabilities, the stakes are often high, and tragedy can come quickly. Patrick Melia filed a lawsuit against Cole Vocational Services after his son, who was nonverbal, died while in the care of one of Cole’s day programs in 2012. While the person in charge of taking care of Michael made an unauthorized stop at home to check on the staffer’s infant son, Michael was left alone in the car with his food — even though he required 24-hour supervision and was known to choke while eating. The staff member returned to his car to find Michael had choked on his lunch and died.

Shortly after, according to police reports, Michael Melia’s caretaker attempted to kill himself by drinking laundry detergent. He told police that after Michael’s death, he would have no steady source of income and that he had hoped his life insurance would provide for his family.

Cole Vocational Services, which is part of the Mentor Network, a large provider that operates in 16 states, declined to comment on the case.

Those who work in day programs say that even with these class-action lawsuits, little is changing.

Conditions at the day programs have also posed problems for staffers, some of whom say they have faced labor abuses and injury in the workplace. In 2015, workers filed a class-action lawsuit against Mission Hope, which they allege failed to provide meal breaks. Mission Hope did not respond to repeated requests to comment on the lawsuit, which is not yet resolved.

Cole Vocational Services also settled a class-action lawsuit in 2017 that was brought by employees; the suit accused Cole of meal and rest period violations and failure to pay minimum wage and overtime.

“Our settlement should not be viewed as an admission that we violated any laws, as that was never determined in the case,” a representative of Cole Vocational Services said in a statement. “As an organization, we strive to comply with all aspects of the law and compliance with wage and hour laws is no exception.”

Those who work in day programs say that even with these class-action lawsuits, little is changing. A person who has worked as a direct care staff member in day programs for over 20 years said he tore a muscle in his arm last year when a client fell on top of him at work. FiveThirtyEight granted him anonymity because he feared repercussion from his employer. He’s now in his 70s and earns $11 an hour. This year, his day program began instructing direct care staff members to make sure to take a paid lunch break — but they must still eat with their wards. “We can’t leave our clients anyway,” he said. “It’s still the same. … They overwork us, making us take care of more clients than we can handle at a time.”

Since Jackie left Mission Hope, Patricia hasn’t been able to find another program that has an opening for Jackie to join. For the past year, Jackie has stayed at home with her mother. An aide provided by the state stops by the house for several hours a few days a week, but Patricia worries that Jackie has little to do but watch her cherished collection of children’s movies and rifle through her mom’s purse to organize the items inside.

There is already a shortage of service providers in California, which means that parents and clients have fewer choices when trying to find a program that will best serve them.

When she gets frustrated, Jackie sometimes bangs her head on the kitchen table. “I’m sorry you’re so upset. I wish that you could calm yourself. I know you hurt your head,” Patricia speaks to her softly, almost in a whisper. “I’m sorry.”